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Is It Celiac?


beachbel

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beachbel Apprentice

Hi. I'm looking for suggestions on my son's situation. He is seven years old and had a low positive blood test for celiac disease ( His Ab, IgA was 20 with a range of over 19 positive). I should mention that is IGA was low (50 with reference range of 51-259 normal) which the dr said can cause the Ab, IgA to be a false low too. So we had a endoscope biopsy done. I just got the biopsy results yesterday. The biopsy found he is lactose intolerant and it also found inflammation but the dr said it isnt inflammation that is typical of celiac disease. So the dr gave us two options. First, I can put him on a lactose free diet and then if that doesn't clear up his symptoms, put him on a celiac diet. Or the second option is to put him on a lactose free diet and then have him re-tested in a couple of years for celiac disease while monitoring his symptoms and growth carefully. His symptoms are constipation, foul smelling bowel movements, and he prefers to avoid gluten and milk products ( we did make sure he had plenty of gluten for the 6 weeks prior to his biopsy).

I should mention that I have celiac disease and have a 14 year old son on the celiac diet. My 14 year old had a higher positive blood test and more symptoms, including stunted growth; his biopsy was completely negative. Even though his biopsy was negative, the dr had us put him on the celiac diet because of the severity of his symptoms and he is responding well to the diet. The dr is still checking him for other conditions since his biopsy was negative.

So, does anyone have any suggestions? It seems my boys have fallen into the "gray" area of diagnosis and I want to make the right decision. Thank you in advance.


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lizard00 Enthusiast

I have very low IgA, too, and it does greatly affect the test results. If your son falls below the range, and still tests positive, that would be a pretty big indicator to me. If it actually shows up on the test, even though in the low range, it may be really high for him.

And with 22ft of small intestine, it's possible that they just missed a spot that fit their criteria for damage.

Looks like celiac to me. :)

leadmeastray88 Contributor

I have to agree with Lizard00.

It does really sound like Celiac since his blood was positive, and it's not a "low positive" if he's IgA deficient which he clearly is... so in reality his IgA levels are probably extremely high.

I would take the bloodwork as enough evidence because some Celiacs will never have a positive biopsy no matter how much gluten they eat. You don't want to poison him any more. Maybe your doctor will give him a positive dx based on bloodwork alone. You should consider also that many Celiacs also have intolerances to other foods, dairy being one of the more common. It's possible that 'inflammation' is being caused by both gluten and dairy.

Good luck!

beachbel Apprentice

Thanks for the feedback. We are definitely leaning towards putting my son on the gluten free diet. I guess it won't hurt whereas if I leave him on gluten it could cause damage. He prefers gluten free food anyhow.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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